 |
July 4, 2008 Today is July 4th, Independence Day, a very important holiday for us Americans and every year I reflect on the meaning of independence and freedom. To parents of children with autism, the word 'independence' seems to be a part of our every day vocabulary, and something we strive for and hope for our children. This past year I learned a lot more about independence while interviewing adults on the spectrum for my book, Autism Life Skills: From Communication and Safety to Self-Esteem and More - 10 Essential Abilities Your Child Needs and Deserves to Learn. I learned that many adults were still improving themselves and their essential skills, and that for many, some of the skill acquisition came later in life. This is nice to know because so often as parents we hear about 'windows of opportunity' in terms of age and often we are discouraged by the powers that be ('Well, if he hasn't learned it by now.....). It is a good idea to start early so as to instill good behavior patterns and healthy routines early in life, but we all know that it is not possible for all of us to do that. But thinking ahead and teaching some of these things when you can or the moment presents itself will help your child in the future. I haven't given up on toileting issues, but it's not the focus of my day anymore. Zosia Zaks author of Life and Love: Positive Strategies for Autistic Adults, remarked to me that parents need to realize that when you are parenting a child with autism, you are parenting a person with a developmental disability and you will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I'd still be discussing toileting issues when my son was old enough to vote! That being said, independence is a goal most parents have for their children. Yet we need to remember that each child is different and that some will need more supports and more of our direct help for many years. Others will leave home to live in group homes or residential facilities perhaps earlier than later because their behaviors have become impossible despite a parent's best efforts. Others will continue to live at home because the parents are afraid for their adult child's safety out in the real world. Others are at home because there are not enough living options in their community. Some will leave home to go to college. The point is that adulthood will look different for everyone. No matter the functioning level of the child, we strive for them to reach their potential. It may look differently for each child, but as the years roll by you want to see your child learning the skills they will need to be as independent as possible in adulthood. Even if they end up still living at home with you for a long time, perhaps they can be in charge of doing the laundry! Today, now that my son is 19 and a team of people are striving to prepare him for adult life, independence to me means that we have the freedom to think outside the box and not just do what's been done before; that we prepare a future based on a person's strengths and abilities, and not just focus on the deficits. Independence means having the freedom to look and act a bit different, and still be fully included in society. Independence means the freedom to be seen and considered as a person, not a disability. Happy Independence Day! March 17, 2008 Usually, I write about autism related topics here, but right now I am experiencing what many of you older parents may be going through: being part of the Sandwich Generation. Caring for elderly parents as well as a teenager or an adult child who needs more of our time and energy than your neurotypical offspring. Soon after my dad passed away in September we moved my mom down here to an assisted living place a mile from our hours so we could visit every day. She has a bit of Parkinson's and requires extra help. It is interesting now to have one foot in autism and one foot in Parkinson's. There are some similarities which I won't go into right now - that's for another column, but you will forgive me if I share an incident that happened yesterday, March 16 (Palm Sunday for those who are keeping track).
As I walked into maman's room she said "This has been the worst Easter Sunday of my life, I've been alone all day" and burst into tears. What could I do but laugh? Now, if it's not my son's autism keeping me on my toes, it's my mom's Parkinson's. At least my son's brain cells continue to grow and improve! Happy St. Paddy's day! February 11, 2008 Karen McCarron who explained that she tried to "fix" her 3-year-old autistic daughter by suffocating her with a plastic bag was convicted of murder recently, at the Tazewell County Circuit Court in Pekin, Illinois. Jurors deliberated for nine hours over two days before rejecting her insanity plea and finding the 39-year-old Morton woman guilty of two counts of murder, obstructing justice and concealment of a homicidal death. McCarron, who was immediately taken into custody, faces up to 100 years in prison when sentenced on March 6. Why are we not hearing more discussion about this case in the autism world? "All Karen ever thought about was finding a cure for the autism," Paul McCarron said during the opening day of his wife's murder. His wife, Karen McCarron, 39, a former pathologist was accused of suffocating her 3-year-old autistic daughter with a garbage bag on May 13, 2006. McCarron also testified she felt responsible for Katie's autism because she allowed the child to get vaccinated. Many parents and professionals believe that autism can be caused by a mercury-containing preservative used (or once used, depending upon the vaccine and where you live) in childhood vaccines. It "brought me a great deal of guilt," she said. In no way do I condone Karen's actions. But it is interesting to note that with all the progress we have made, one thing has not changed: moms are still made to feel guilty about their child's autism. Years ago, we were told we were responsible for our child's autism because we were 'refrigerator mothers.' Now, moms are made to feel guilty because if their child is autistic it is that A) they vaccinated their child and/or B) they have not followed all the different treatments correctly (or found the money to finance these treatments) to cure their child. And if they have tried the treatments and they haven't worked, they must not have done the treatments correctly, or they didn't go to the right doctor. Karen's husband and inlaw's testified that Karen told them in different ways that she could not handle autism in her life. Karen is quoted by her mother-in-law, Gale McCarron, as having said "If Katie had cancer, I could deal with it. But I'll never accept autism." "She said at least three to five times that I can recall, 'I really wish Katie were dead,'" Gale McCarron said during testimony in the murder trial. Karen even told her husband, Paul, that she wanted to put her daughter up for adoption, he testified. When asked by state prosecutor Kevin Johnson how he replied to this, Paul said, "No way in hell." Clearly, Karen was signaling that she was overwhelmed and stressed out. Katie was actually in Karen's care for only a short period of time, a matter of weeks, before Karen killed her. Why did her family let her have Katie? Why was she left alone with little Katie when she clearly stated her feelings about Katie? There is more and more media exposure these days on children who have recovered from autism. Some of this exposure is empowering, but often the message parents new to autism are hearing is: " If you do xyz, your child will be recovered, like mine was, too." However, the truth is that autism is a spectrum: the causes for each child's autism varies, and so do the treatments. Vaccinations have caused autism in some children, yet they are not the cause for all autistic children's autism. There is not one treatment or therapy or strategy that works for all, and parents have to learn to be analytical and figure out what makes sense for their child. And like in all fields where there is money to be made, parents have to be vigilante and ensure they are seeing honest, knowledgeable practitioners at a reasonable price who don't have a personal agenda. There is this notion in our society as well that, to paraphrase Garrison Kellior form Prarie Home Companion, "every child is above-average." Most parents have a hard time accepting the fact that their child is not the perfect child they were expecting, and Karen McCarron was no different. "Maybe I could fix her this way, and in heaven she would be complete," Karen told police two days after she killed her daughter, Katie. McCarron told police she felt like a failure because of the child's autism and was heartbroken when her daughter Katie failed at simple tasks. "I just wanted autism out of my life," McCarron said. If the message that parents are getting from that the media and those of us in the autism is that autism is 'bad' and that all children can be 'fixed' in the same way, then we need to stop and think. There is not one cause, not one treatment, not one autism. Many people on the autism spectrum live wonderful lives as adults. Some did not need much help to get there, some did. Some started out very impacted by autism as Katie was, others did not. As the saying goes "When you've met one person with autism, you've met one person with autism." And in this case, one little child, Katie, has died, because she was a person with autism. January 7, 2008 Happy New Year and Bonne Année! May all your problems be behind you and may all your dreams come true in 2008. Sorry to say I have not been writing here or producing radio shows for Autism One Radio for some time. I'm happy to report that I will be back here writing on a regular basis, and I have some shows produced that will be aired at least once a month starting later this month. I am well aware that the holiday season is a hectic time of the year for everyone, but if you want to read my excuses for being months behind in updating my website, keep reading. If you don't want to, go and enjoy the minutes you save by doing something really fun. Besides Thanksgiving, Christmas and New Years, my immediate family also has three birthdays and one wedding anniversary to celebrate in that same time period. If my husband and I had been wise adults when we got married instead of bright, young, in-love, college students, we would never even have thought of getting married around Christmas time. Furthermore, If we'd been really wise we would not have married someone with the same astrological sign. And if we hadn't been in the throes of passion, we would have organized Jeremy's birth to happen at a more apt time of the year. We do learn from our mistakes, which is why Rebecca was born at the end of April when there is nothing going on. Regardless of all the aforementioned excuses, you would think that by now we have had more than a few years to figure out a system to be organized in time for the holidays. However, we want you all to know that last year's New Year's resolution was that THIS holiday season would be different. We went so far as to buy exquisite (read expensive) cards at 50% off at last year's after-Christmas sale and stored them in the front of our walk-in closet where we tripped over them every day, thus reminding ourselves daily, that THIS year we were going to get them out in a timely fashion, the day after Thanksgiving. Actually, the real reason we put them there is that if we put them in a 'safe' place, we may never remember where we put them and would even forget their existence. However, this year we really have good excuses why the beautiful holiday cards are still sitting in the closet and that this website has not been updated in a long time. To begin with, my father became very ill last spring, and eventually passed away in September. This was a shock to the Sicile clan as we all thought papa would continue in the tradition of his forefathers: live a long and healthy life until the age of 98 (killing everyone else off with their energy) and go to bed one night in his 98th year and never wake up. Unfortunately, such was not the case. However, as he breathed his last, Edith Piaf was playing in the background and we toasted him with a glass of champage as we knew this was the way he would have wanted to go. Papa is sorely missed by all his family and friends who will never forget his zest for life and his adventuresome spirit. Then, in October the wildfires hit San Diego and we were evacuated for three days. Luckily our neighborhood was spared, but our happiness at finding our home still standing was tempered by the knowledge that our house was OK only because the wind had shifted and someone else's neighborhood had gone up in flames. This is the second time in four years that wildfires have come within miles of our neighborhood (although we live three miles from the beach) and we are hoping that the powers that be have finally learned what needs to be done to keep San Diego safer. We are also hoping that this time around, the local taxpayers will vote to spend money to enable San Diego to come up to national standards in regards to the number of equipped and manned fire stations a city of this population should have. In November my mother moved from her home in Altadena to an assisted living place right down the street from us. This was a family project of some undertaking with the Sicile siblings taking part one way or another. Daniel, my husband, has been really good to his mother-in-law and spent so much time making sure she is comfortably installed in her new living arrangements that our house is now in disrepair. We are glad to have maman close to us. She is doing OK, but she misses papa terribly. Also in November, Daniel's family came to visit. It was the first time that the Siciles and the Kiras were together for Thanksgiving and it was a lot of fun. Besides eating our way around town we went antiquing for old paper. We always enjoy the visits with Grandpa George and Sara and Ben and wished they lived closer. In December, I had to deliver a 60,000 word manuscript to my publisher by December 15th. I stayed at a hotel in Del Mar (5 miles up the road) for a week so that I could just focus on the book. It is amazing how much writing I can get done when I am not interrupted by daily life involving a husband, 2 teenagers, 2 cats and one dog. Meanwhile, husband Daniel started a new position with another company. Before he was overseeing construction of grades K thru 12 schools for the San Diego Unified School District. He has now graduated to community college and is overseeing the expansion of the one of the San Diego community colleges. He is looking forward to the challenge. As far as we are concerned we could not WAIT for 2007 to be over, and we are thrilled it is 2008! What we will remember from 2007 is the support we received during the rough patches from our friends and colleagues. It meant a lot to us and we appreciate it. For our 2008 New Year's resolution, we are again planning to be organized and send holiday cards and I plan on keeping my website updated. In fact, we are thinking of writing our December 2008 holiday cards and to write all my articles and tape all my radio shows over the next two months in order to be prepared way ahead of schedule. Of course, we'll be doing that in between chauffeuring Rebecca (who had the sense to be born nowhere near a major holiday) around to rock concerts and tennis tournaments, helping Jeremy reply to fan mail as a result of his media exposure on MTV's True Life, and visiting maman in her new home. Oh, and lets not forget about walking Jeremy's assistant dog, Handsome, and caring for Rebecca's two cats, Speedy and Gabe, and of course fulfilling our work responsibilities. My family and I wish you all a happy and healthy New Year. May all your troubles be in the past and may all your dreams come true! Chantal, Daniel, Jeremy and Rebecca August 30, 2007 It's tough having to choose between helping your kids and helping your parents. Those of us with teens and young adults are beginning to feel the squeeze of being members of the Sandwich Generation. Our children are getting older and so are our parents, both requiring our assistance to become or stay independent. Just when you thought you couldn't add more to your plate, your elderly parents are requiring more of your attention. Soon you find yourself looking for caretakers and support staff for your parents as well as your offspring. That pile of insurance papers you already hated filling out for your child looks small sitting next to the pile you need to fill out for your elders. The number of phone calls you have to make to health professionals, therapists and agencies suddenly quadruples. If you weren't feeling overwhelmed, you certainly do now. For those of us who have teens that require 24 hour care as well as parents requiring 24 hour care, it can be quite a challenge. But of course, you must help those who raised you. It's your turn to give back. Your child will still be here in a few months or in a year, your parents may not. July 3, 2007
I can't believe how much time has gone by since I've written anything here. Perhaps the most exciting event in May was that Jeremy was asked to the Senior Prom by a beautiful and delightful young woman. This engaging young lady was Jeremy's peer tutor a few years ago for Adapted Physical Education (APE) and I had heard about how she was one of the best peer tutors he'd ever had. They both had a wonderful time. Jeremy looked like James Bond in his tuxedo. Jeremy needed a support person to go, so we asked one of his first tutors in SD that we have known for 10 years and who hangs out with Jeremy once in a while. We rented a nice car, and Jeremy's support person put on a suit and drove the lovely couple. Despite all the sensory challenges (tightness of the clothes and shoes, lots of commotion and noise) Jeremy was able to enjoy it for about three hours. What a wonderful experience for Jeremy to have. He was thrilled, and so was his 'date.' In May, Jeremy, who has been learning about micro - enterprise with his flower business on campus - Jeremy's Stems - produced the centerpieces for a wedding. He had put in a bid and got the client and finally the wedding day came. It went really well and the wedding party was thrilled and received many compliments. Jeremy's sister Rebecca, who recently turned 15, became an income producer in May by starting her first part time job that she got for the summer. May continued to be productive. Jeremy was the recipient of two awards from his high school based on his striving for academic success. Meanwhile, my most recent book Adolescents on the Autism Spectrum was given the 2006 San Diego Book Award for Best in Health/Fitness. May is also the month that the IEP and ITP team came together for a few more meetings to put together Jeremy's transition services for the following year, as this is his last year of high school. Months before this process had started out looking a little rocky, but in the end the team pulled together and came up with a plan to help Jeremy transition to adulthood based on his interests and desires and goals. We are all looking forward to a new chapter in our lives, although it is a bit scary to see how our teens are changing so quickly into adults. This means we are getting older, too - and perhaps that is the scary part! June did not have as many highlights, but it was the month Jeremy walked across the stage and participated in his high school's graduation ceremony and Rebecca's tennis team (USTA) won Southern California championship for their age group and are going on to competer for State Champs (once in a while I have to brag about Rebecca as well!). Summer officially began for the family when School let out for both Jeremy and Rebecca. Now it is already July. It started out great for me as I got to take both Jeremy and Rebecca to see Fall Out Boy - a great band that puts on a great show. Next week we are all planning to go to Scottsdate, Arizona for the National ASA annual conference. Mom will be presenting three times and book signing in between lounging at the pool with Dad and the teens. Hope to see you all there! May 10, 2007 Most recently I was invited by the The Shafallah Center in Doha, Qatar (www.shafallah.org.qa) to present at their Second Annual International Forum on April 23 to 25, the focus of which was Media and Disability. They had invited leaders from both the disability and media arena to foster international alliance, share current trends on the right to education for children with special needs, as well as to hold discussions on media as a positive change agent. I was asked to speak on the Cultural Implications of Media and Disability in France and the United States as well as to share information about my books and Autism One Radio. This three day event was one of the most inspiring I have yet attended. First of all, the people in this part of the world are very hospitable and treat every guest as a distinguished guest. I felt both honored by the way I was treated and humbled by the quality of people present, assembled in the name of disability rights. The Forum was held under the patronage of Her Highness Sheikha Mozah of Qatar and co-chaired by Ms Cherie Booth QC (wife of British Prime Minister Tony Blair). Anthony Kennedy Shriver (Founder and Chairman of Best Buddies International) was a keynote speaker. Special guests included some of the world's First Ladies as well as other dignitaries such as the Ambassador to the US from Ecuador. There were disability activists form all over the world including Jordan, Lebanon, Japan, Korea, Canada, Bangladesh, Palestine, Egypt, New Zealand, Israel, US, Argentina, Ghana and Singapour. The opportunity to exchange ideas and network over three days with such a diverse combination of individuals all motivated by the same goal of improving human rights for those with disabilities was a wonderful opportunity. I arrived in Qatar exhausted and overwhelmed with all my work deadlines, the real life of raising two children - one of them severely impacted by autism - assisting my elderly sick parents and 30 hours of travel, yet I left rejuvenated and recharged from my experience there. After hearing about the experiences in many countries, I felt a renewed appreciation for the laws we have here which are some of the best in the world in terms of disability rights; yet with the realization that laws are no good if they are not enforced. My message to all of you involved with disabilities is: find out what the rights are for the individuals you care for, teach or support and make sure they are enforced. The responsibility lies upon us to make sure everyone has their rights respected. April 14, 2007 After MTV aired the True Life documentary "I Have Autism," Jeremy received lots of emails which he thoroughly enjoyed. When asked by the MTV producer to share his thoughts on the show, here is what he replied: "This was a good show. I thought it really evenly showed my universal problem of communication. The video very nicely portrayed my life because my life keeps me from making friends. The show was good because it showed I really understand even if I look like I am not paying attention. I have more going on inside than it looks like. Please know I am getting many emails from people wanting to communicate with me. I am happy I can now answer. I really like the experience of being filmed. TV is like a kaleidescope through which we can visit the world of others." Jeremy can be reached at jsicilekira@yahoo.com. March 10, 2007 Jeremy Sicile-Kira will be on MTV True Life: "I'm Autistic" on March 18 at 9:00 pm EST. For neurotypical Teenagers who want to know more about autism, click here. February 28, 2007 "Children aren't coloring books. You don't get to fill them with your favorite colors." Recently, I found the time to read a book that had been on my list for some time, the novel Kite Runner by Khaled Hosseini. This is a great, moving story that stays with you long after you've turned the last page. Near the beginning of the story, the main character's father is complaining to his best friend that his son, Amir, is not like he was as a child, that he always has his nose stuck in a book and doesn't stand up for himself when pushed around by the neighborhood children. His friend replies "Children aren't coloring books. You don't get to fill them with your favorite colors." As parents we need to be reminded of this now and again. Whenever we are preparing for our teen's IEP or an ITP, we need to ask ourselves about the choices that the team is making, and whether or not it is about the student's wants and needs or our own. By raising them with self-esteem, by raising them to be as independent as possible and respecting their choices, we are helping them become their own person. In this way we can help our teens find their own, true colors. February 8, 2007 Read my article on Dr. Bernard Rimland in Spectrum Magazine, February/March 2007 edition. Dr. Bernard Rimland passed away just a few days before Thanksgiving 2006 and will be mourned by many. A sometimes controversial figure who continually searched for answers, Rimland changed the way autism was viewed around the world... [more...] January 8, 2007 Last time I wrote here, we were all getting ready for Thanksgiving. This year, it was hard to feel cheerful as Dr. Bernard Rimland, a pioneer and guiding force in the field of Autism passed away a few days before Thanksgiving. All of us who knew him will miss Bernie and his 10:00 pm phone calls with another bright idea or comment to make. It is hard to believe that my fax machine won't be spitting out documents with Bernie's comments scribbled in the margins. I really miss his sense of humor, although I know it was not his most important contribution to mankind. If it were not for him, the field of autism would still be in the dark ages. The holidays came and went like they do every year - happy to have time with the kids at the beginning of the two week vacation and waiting anxiously for the start of school at the end. Working at home has its benefits, but a major drawback is that you have no place to escape to think, and if you have a child (no matter the age) who requires constant supervision and you don't have all your hours covered, you are IT. This year, the addition of an assistance dog and a little kitten added more demands on my time and my brain was feeling exhausted by all the multitasking. However, I did appreciate that I had some options and that my husband's work gave him some flexibility in terms of time constraints. Best wishes for a happy and healthy 2007. November 17, 2006 Thanksgiving is almost upon on. This is my favorite holiday as it is not based on any particular religious belief that can separate neighbors, but rather it exists to make us all pause and reflect on all that we have to be grateful for. Yes, family life with autism can be tough. But we have so much to be thankful for here in America. The 'Refrigerator Mother' theory is good and buried here, while in other places of the world, (France for example) parents are still struggling to get any kind of therapy other than psychoanalysis. In all of France, there is only one DAN! doctor. Yes, we still have to battle many injustices, but we are winning the war. For those of us with enough food on the table and a roof over our heads, we are already better off than many people living on the streets and needing to go a soup kitchen for a handout. I like the idea that millions of people are sitting down and eating the same foods that was eaten by the original Pilgrims and Indians (while they were still friends and the settlers didn't disrespect the natives). It's also the only day the Americans spend more time in the kitchen than the French. So relax, sit down, enjoy some good food, enjoy your family (no matter how dysfunctional) and give thanks about all that you have to be grateful for. October 9, 2006 Some of you may have seen the article "Brave New World - 13 Things to Keep in Mind as Your Child with ASD Reaches Adolescence" in the September October issue of Autism Asperger's Digest magazine. In this article I briefly discuss topics that parents need to be thinking about when their child grows from a tween into a teen. Some of these topics include non-compliance, bullying, self-advocacy, self-regulation. If you haven't read it and would like to, click here. September 6, 2006 "Mom, don't leave me with people we don't know," my son spelled out. So started the most awful day of my life. My son's most awful day had taken place one week earlier, but he could not get the courage to tell me about it until some time had gone by. I am sharing this private piece of information (without giving anymore detail) with you for three reasons. The first is that parents need to be aware that although they may think they are leaving their child in a safe place in caring hands with trained and vetted staff, bad stuff can happen. The truth of the matter is that people who are looking for powerless and potential victims, look for work or to volunteer in places that provide services to the elderly, the disabled or the sick. Our non-verbal autistic kids are perfect targets. Secondly, it is very important that you do your utmost to teach your child a way of communicating. Communication is power, as my son's experience proves. Until 2 years ago, my son could not communicate except to tell me his basic wants or needs. Through RPM - the Rapid Prompting Method, he was able to learn, slowly but surely, how to spell out on a letter board. This is also how he writes his school reports and takes tests. Although he was unable to prevent 'the sad, sad story' (as he now refers to the incidents) he was able to communicate to us and the authorities, and this has empowered him. Thirdly, even if you think your child does not understand, explain to him or her, (many times if he or she needs it) with pictures and with words, the different parts of the body and where it is appropriate to be touched by others, and where it is not. They need to know this for their safety. Teach them to let you know if someone has touched them inappropriately and some way to communicate it to you. It's important that they understand the value of communication and the right they have to be treated respectfully and to never be a victim. Communication is power. July 23, 2006 A few weeks ago, a couple of UK newspapers (The Sunday Times and The Daily Mail) reported that a team of doctors at the University College Hospital's assisted conception unit in London wants to create the country's first "designer babies" free from autism. There is so much wrong with the idea of 'designer babies' that I don't even know where to start with my comments. I'm all for genetic research to help people live better lives. But to use that information to decide whose life is worth living and make that decision for them, is so unethical and unbelievable. The world has gone mad if people believe they have the right to make 'quality of life' decisions about other people's lives. If you want perfection, buy a doll. If you want to ensure your child doesn't have autism because you already have a few affected children, adopt an older child. I thought we made babies because we want to raise a child, warts and all, not because we want a certain type of baby. We are becoming a society of Hitlers, deciding who should live and who should die. Hitler got rid of the developmentally disabled and gays as well as Jews. If we are going to use genetic testing to get rid of imperfect human beings, I vote we do something useful like figure out the genetic make up of serial murderers and rapists, war mongers, and twin tower - destroyers. We could even figure out the genetic make-up of politicians who approve the expenditure of billions of dollars on a war in a foreign country while people starve and have no medical coverage in their own home towns. With the right kind of genetic testing, we could get rid of all the pharmaceutical executives who continue to allow the production of vaccines containing mercury. If we get this genetic testing down pact, here in Southern California we could wean out all the potential frumpy brunettes so everyone would have that same blond, perfect look without getting all the plastic surgery and spending hours at the beauty salon. Or maybe that is already happening and that's why I'm having a hard time telling my neighbors apart. With this kind of screening applied to different genetic make-ups (or should I say screw-ups), we could potentially be getting rid of future Stephen Hawkins (the physicist), Mozart, Bill Gates, Temple Grandin, Helen Keller and many others who have contributed so much to the world. And that's not a good thing. Are we as a society really going to allow this to continue? We are really a sick society when we use knowledge to exterminate those who are different from us - whether it be in war or in a hospital lab - rather than help them. July 5, 2006 I hope to see many of you at the Autism Society of America National Conference in Rhode Island July 12 thru July 15. I will be co-presenting with Stephen Shore on Puberty, Hygiene and Sexuality in Adolescence (Friday, July 14, 1:45-3:00 PM), Preparing for the Real World of Work (Saturday, July 15, 12:15-1:30 PM), sitting on the Writer's Workshop Panel (Saturday, July 15, 10:00-11:15 AM) and book signing at the Penguin US booth #239 (Thursday July 13, from 2:45-3:15, Friday July 14, from 3:00-3:30, and Saturday from July 15, 11:15-12:00). Please stop by and see me and tell me what topics you would like to hear more about on my radio show and on my website.
June 14, 2006 Father's Day is almost here. I'm at Von's helping my 17 year old son, Jeremy, to pick out a Father's Day card and he is having a difficult time. Jeremy is one of 30,000 Californians impacted by autism. In 1987 there were less then 2,800 cases statewide, today there are 30,181. (California Department of Developmental Services, April 2006). These numbers are scary, terrifyingly scary. But thanks to a number of devoted Autism Dads, we know much more about autism than we did before when my son was diagnosed 14 years ago, and the future looks brighter for today's youngsters on the spectrum. In California, we are particularly blessed with many active Autism Dads. Autism Dads are fathers who realize that a person can make a difference, and then go out and prove it. The greatest Autism Dad of them all, Dr. Bernard Rimland, forever changed the way autism was perceived in the early 1960's with the publication of his book, Infantile Autism: The Syndrome and Its Implications for a Neural Theory of Behavior. Rimland's book refuted the notion of 'refrigerator mothers,' the theory expounded by Bruno Bettelheim and his followers who blamed autism on cold and unfeeling parents. Rimland founded the Autism Research Institute in San Diego, becoming a source of information and hope for parents. ARimland went on to discover and promote research in different biomedical treatments that have recovered some children from autism and substantially improved the lives of many others. In Los Angeles, ten years ago, Autism Dad Jon Shestack (along with his wife Portia Iverson) founded Cure Autism Now based on his belief that with enough determination, money and manpower, science could be hurried so that answers could be found sooner rather than later. Cure Autism Now has, since its founding, committed over $25 million in research as well as established and supported the Autism Genetic Resource Exchange (AGRE), a repository (gene bank) of genetic and clinical information that is made available to autism researchers worldwide. In Orange County, Ed Arranga, another Autism Dad, decided that autism needed a voice, and he gave it one by starting up the internet radio station Autism One Radio, which made it's debut a year and a half ago. Now there is no need for anyone in the world dealing with autism to feel alone or isolated; as long as they have a computer they can listen in at their convenience and hear information on all aspects of autism from many leading experts and in different languages, as well. Up in Northern California, Autism Dad Lenny Schafer has been sharing news with over 20,000 worldwide subscribers with the on-line Schafer Autism Report. The Schafer Autism Report started out with a few articles emailed to a small group of people back in the day when personal computers were just becoming a household item. Schafer, whose report headline reads "Healing Autism: No Finer a Cause on the Planet," has been publishing this on-line newspaper for free for many years from his small apartment while caring for his teenage son, who is severely impacted by autism. The Schafer report publishes anything and everything in the media around the worked that has to do with autism, and provides a monthly listing of autism conferences and events around the world. Also in Northern California, four Autism Dads, including Rick Rollens, founded the UC Davis M.I.N.D. (Medical Investigation of Neurodevelopmental Disorders) Institute. The story goes that Rollens went to UC Davis and asked them what it would cost to start a research center to unravel the mysteries of autism. He was told about $10 million. Within two weeks Rollins and the other Autism Dads raised $1.5 million. The M.I.N.D. Institute is now one of the premier centers in the nation racing to identify the causes and develop better treatments, interventions, and preventions for neurodevelopmental disorders such as autism. Meanwhile, back at Von's, Jeremy has found a card he wants to give his very own Autism Dad. Every father helping to raise a child with autism is, on a smaller scale, but just as importantly, an Autism Dad. So to all the Autism Dads - known and unknown- making a difference in a child's life "Happy Father's Day!," from a very grateful Autism Mom.
May 30, 2006 Some of the presentations were broadcast live on Autism One Radio, and live interviews were also aired. Teri Small, Betsy Hicks and I interviewed a variety of experts. One of the aspects of being there (and at other conferences) that I really enjoy are the opportunities for practicing social skills. Let's face it, I don't know about you, but I don't get that many opportunities to have a social life because of time constraints. Seems that dealing with autism and all it entails takes up a lot of my 'free' time. Sometimes I feel like I'm getting a little autistic, too! These conferences give us an opportunity to chat with people, share a meal and a few laughs. Sometimes, at the fundraising dinners, we even get to dance! Hope to see you next year at Autism One!
May 22, 2006 I get up and pop a few Melatonin, a natural relaxer, hoping that will help. I feel relaxed, but a demon jumps on me. This time it is one of the heavy duty ones: the 'what if I have to hire an advocate in regards to school issue?' quickly followed by his buddy 'how are we going to pay for all this?' More and more arrive, and I can't tell anymore who is saying what. Now they are all on my quiet beach, which is no longer a paradise, it is starting to feel like hell. The real torture starts, the prizewinner demons are here: 'Is the family unit and his sibling suffering because our severely autistic son is still living at home?' 'Will we always be looking for people to help him who don't give up hope?' This sleepless night hits its climatic peak when the grandmaster of all demons arrives: the 'what will happen when we are no longer here to look out for him' demon. Another sleepless night spent with the night demons. Little by little the room starts getting lighter and lighter as daybreak arrives. Demons are like Dracula, they don't like daylight so they disappear one by one in the morning mist. I am exhausted, but I must get up, time to start my parent duties before attacking my worker duties. I stumble down to the kitchen to make and swallow my necessary jolt of caffeine. OK, now the caffeine starts hitting my brain cells, I am starting to feel awake and now, the night demons don't seem so bad. After the kids are off, I go for my obligatory run outside. Somehow, exercise makes me feel invincible - those night demons may visit, but they won't stay.
May 14, 2006 And that is what it is all about when you are a mom, no matter what kind of child you have: you never give up. Happy Mother's Day to all the moms out there.
May 8, 2006
I Am Poem
May 1, 2006 Well... what can you reply to that? It is such a bad response (let alone such a rotten pick up line) on so many levels I don't know where to begin with dissecting how many people he has just insulted or negated with that one short sentence. Let's just say that for once, I was left speechless. |
 Latest Book Adolescents on the Autism Spectrum: A Parent's Guide to the Cognitive, Social, Physical, and Transition Needs of Teenagers with Autism Spectrum Disorders. [more...]
|
 |
